Insurance rejections of 'experimental' treatments create tough times

A year ago, Meagan Sunde walked into ProCure with a stack of personalized letters.

A couple of days prior, her husband, John, had passed along a suggestion from ProCure – the Warrenville center providing Sunde’s lifesaving proton therapy – that she write a personal appeal to their insurance company. This felt, in many ways, like the family’s last chance.

They’d already been denied coverage for the proton therapy, a pinpoint-accurate radiation treatment appropriate to treat Sunde’s breast cancer because she’d damaged so much tissue with more traditional radiation treatments the past two times she had cancer.

Like so many who struggle with insurance companies, Sunde, 44, of Huntley, had been denied on the grounds that her treatment was “experimental.” Yet some treatments deemed experimental by insurance agencies are thought by doctors to be the safest, surest and sometimes only option – a fact that can cause anything from headaches to a lifetime of debt to the realization that treatment is out of reach.

With the help of ProCure, the Sundes had appealed United Healthcare’s original decision, been denied again and were appealing once more. This time, it seemed that to avoid a $350,000 storm cloud of debt the rest of their lives, it might help if Sunde could make someone handling the papers cry.

“They are going to want me to beg for my life,” Sunde remembered thinking when she heard John’s suggestion last August. “I told John ... ‘I can’t do this.’”

Determined, she sent an email to friends for help, and it got passed along to more friends, and a couple of days later, Sunde and ProCure sent a thick stack of letters – 350 or more, she remembered – to United Healthcare.

But to those close to Sunde’s case – and a doctor interviewed by the Northwest Herald who was briefed on her situation – proton therapy was the right option.

Although he’s never met Sunde, Dr. James Ruffer, medical director of radiation oncology at Advocate Good Shepherd in Barrington, said he’s sent other patients for treatment at ProCure in Warrenville, the state’s only proton therapy center and one of 11 in the country – a number that’s on the rise.

He said that those patients might meet initial resistance from their insurance agencies, but he knows others who’ve been covered for the treatment, which he said offers a worthwhile benefit.

“The benefits of proton therapy versus photon therapy is that you point a proton beam and put a deposit in certain tissues, and completely avoid other areas,” Ruffer said.

That accuracy can be vital for patients who’ve previously received radiation, he added.

Ruffer said he hopes that Sunde’s inability to get her treatment covered is a rare case, but he added that, more and more, he finds himself in contact with insurance agencies about treatments they deem experimental.

“The number of times I need to call an insurance company has dramatically increased over the years,” he said.

In some of those cases, Ruffer and his patient come out successful. Other times, they don’t.

Andrew Hogle and his wife, Jen Nichols-Hogle, of Crystal Lake came out on the wrong end of a tussle with their insurance company.

In June, Hogle needed a kidney quickly, and his wife had one to spare. Although the two weren’t a perfect blood match, doctors told the couple that Hogle could go through a process called desensitization so his body wouldn’t reject his wife’s kidney.

It’s a $20,000 procedure, and even when the couple’s insurance company said it wouldn’t pay for it, the two were considering covering the cost themselves. But then the kicker: If they proceeded with the desensitization, their insurance company said they wouldn’t cover the transplant, either. That was the $500,000 breaking point.

“It’s just funny because people say you can’t put a price on life,” Nichols-Hogle said. “But when you start talking numbers that are going to [affect] you the rest of your life, you start looking for other options.”

Luckily, the couple found another avenue. A program through Northwestern Memorial Hospital allowed Nichols-Hogle to donate her kidney to a stranger and have her husband receive a stranger’s kidney in return. The two had the procedure in mid-July and have since recovered.

Sunde is healthy, too. For the third time in her life, she’s beaten cancer.

But this time, in addition to the scar on her chest from the treatment, it’s left a $350,000 slice into her future. It comes when she’s taking on more payments from her kids: John, 22, who just finished flight school, and Skylar, 17, who will head to college next year.

Sunde said ProCure has agreed to spread the payments out, and her friends and family once again have stepped up fundraising. But that’s not what Sunde wants.

“You have to get really good at saying thank you when you have cancer,” Sunde said.

She wants to be done with that, done feeling like a charity case.

It’s been a year since the treatment, but she’s not interested in easing up on applying pressure to receive the coverage she believes she deserves.

Her representation through ProCure continues to appeal, she said, but they’ve had little success getting in touch with United Healthcare since the last denial letter came July 16.

Reached via email this week, United Healthcare spokesman Kevin Shermach was unable to provide details about Sunde’s case. But he said that in general, the medical community – not insurance companies – deems a treatment experimental. He referenced the National Comprehensive Cancer Network as the likely source of authority.

He also said that, with regard to proton therapy specifically, United Healthcare generally provides coverage only for treatment of tumors that the therapy has been proven effective toward, based on clinical evidence.

For Sunde, the frustrations of the situation might be best summed up with a couple of sentences in a denial letter from United Healthcare’s appeals coordinator dated July 5, 2012 – around the time doctors told her she needed to proceed with treatment or lose her life.

“Medical literature does not show that Proton Beam Radiation will be effective for your condition,” the note reads. “In addition, based on the definition of a life-threatening disease in the benefit document, you do not have that condition. Your insurance will not cover that procedure.”